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Retinitis Pigmentosa Awareness Month – Bhavini’s story

My name is Bhavini Makwana and I am London Vision’s Engagement Manager, working to campaign for equal access and opportunities for blind and partially sighted people in London. Along with this role, I am a trustee for Transport for All, and Chair for both the BAME Vision Committee and the Retina UK London Peer Support Group. In all these roles, I tackle inequalities, increase awareness of sight loss amongst stakeholders and reach out to community members with sight loss who sometimes have limited access to support and advice. I’m driven by passion and determination, and by my own lived experience of being blind and facing challenges in my day to day life as a result.

Retinitis Pigmentosa

When I was 17, I was diagnosed with Retinitis Pigmentosa (RP). Being told I would go blind to RP was a devastating blow to my 17-year-old self. Shy, naïve, and introverted, it completely broke me. Without real understanding of my diagnosis nor any explanation to my parents and family, we struggled for years to comprehend what my future would hold. As a result, I was a bit of a late bloomer when it came to rites of passage and attending social events: first going to night clubs in my late 20s, my social circle whom I call real friends blossomed in my mid-30s.

I finally received rehabilitation support in my early 30s, and soon stumbled upon the charity Retina UK. Through Retina UK I learned how to interact with others, gained peer support, underwent mobility cane training and more. Before my first contact with Retina UK, I had spent a decade at home with my children. My language and experience was based around CBeebies and Nickelodeon! Retina UK helped me gain some confidence, and begin the transition to working.

Volunteering and employment

I began volunteering on Retina UK’s helpline and this quickly snowballed: I became a Telephone Facilitator for RNIB and an ECLO Support at Moorfields via the Thomas Pocklington Trust volunteering scheme. Volunteering helped me gain key skills and, crucially, confidence. I found a meaningful purpose and I knew I was making a difference. It was refreshing and empowering.

I then joined East London Vision as their Activities Co-ordinator, arranging outings, activities speakers and workshops for seven local societies. Working with East London Vision enhanced my travelling skills, teaching me about schemes like Turn up and Go, the CEA Cinemas and Exhibition card, audio described theatre performances and touch tours. My world opened up to Access to Work, a scheme providing support to disabled employees and employers to retain work.

Elements of this role included highlighting accessibility and advocating for blind and partially sighted people. This led to my current role as the Engagement Manager for London Vision; in this role I campaign for equal access to services for people with sight loss, as well and engaging with stake holders and advocating and influencing.

Lived experience with sight loss due to Retinitis Pigmentosa

I found that my experience volunteering was invaluable for getting into these roles. There are many employment schemes available, and specialised support for blind and partially sighted people, but volunteering allows you to gain skills and knowledge in something you are interested in. Then you can transfer any of these skills into employment – and grab any unusual opportunities that come up. For example, when I was first asked to present a radio show I laughed, put up barriers and hesitated. But one of the most important things that volunteering, and my life experience has taught me is that I should take every opportunity that comes my way and being scared at first can be a good thing. So, I grabbed that radio opportunity, and I’ve been presenting my own radio show (Saturday at 10am on BHF Radio) ever since!

My early diagnosis was in isolation but now I’m more confident living with my RP, as I know and can find out information and access support in case my sight loss decreases further. I now work with and am connected to many other blind and partially sighted people, and I’m always learning new things from my colleagues. I hope that my story has shown that while living with RP is challenging, but with the right support and adaptations, anything is achievable!

Bhavini Makwana, London Vision Engagement Manager

For more information on Bhavini’s ongoing campaigns work, visit the campaigns page.

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